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Monday, 20 September 2010

A Typical Day in the Life of a Narcoleptic

[A week or so ago…]

Yesterday I received an email in which the author kindly invited me to ‘meet for coffee’ and to perhaps accompany her in a spot of shopping the following day in our nearest town. Normally, any mention of ‘town’, especially in conjunction with the word ‘shopping’, would be more than sufficient to cause me, metaphorically, to don my imaginary sports shoes and run to the hills. However, no doubt in some vain attempt to appear ‘normal’ (if only to myself), I accepted.

OK, so what is it about ‘town’ and ‘shopping’ that has the ability to render me a quivering wreck of nervousness? Well, I’d like to think that it’s all psychological, an issue conjured up by my mind, and thus something that in theory the power to conquer is contained within. Oh, if only it were that simple.

I awake the next morning after a full night’s sleep, as usual dominated by non-stop dream of varying degrees of excitement but action-packed all the same. Again, as usual, half-remembered snippets of these dreams darted back and forth in my mind, and would continue to do so for the day to come – as fleeting flashbacks serving to momentarily confuse my already overworked brain!

This morning there was no sleep paralysis or ‘false waking’ to accompany my waking moments, which has to be a bonus, and I manage to hoist myself out of bed with only the customary fuzzy head and routine aches and pains with which to contend - plus some trepidation at the day ahead.

After a good breakfast and my daily round of medication, it is soon time to depart for my rendezvous. I’m only five minutes late, which is something of an achievement! Keeping appointments and adhering to a pre-determined schedule or timetable isn’t my forte – not because I’m lazy, absent-minded, nonchalant or merely rubbish at time-keeping but because, quite simply, the unpredictable nature of Narcolepsy means that forward-planning and commitment is often futile. Whilst the average person might be able to state with some conviction that at such and such a time on Tuesday they will be doing such and such a thing, I cannot enjoy such luxury. Perhaps I would be doing ‘such and such’ but equally, perhaps I would be unwillingly prostrate on the settee, having involuntarily been forced into a ‘moment’ of slumber.

Now, don’t be mistaken into thinking that the narcoleptic slumber is a pleasurable experience. Like one of the statements sometimes used to promote awareness of Narcolepsy, "a nap is only nice when it's a luxury, not a necessity". It’s not a warm, contented feeling of sleepiness, such as that experienced after a satisfying day’s work or after consuming a delicious Sunday lunch. It has a tendency to manifest itself in full-force with no prior warning – none of the gradual slowing down in preparation for the end of the day. No such luck!

More often than not, my eyelids will begin to droop, if I’m still on my feet, the ability to maintain equilibrium and thus remain upright will become a battle that I know I will ultimately lose; similarly my ability to focus will be severely compromised, people’s voices will rapidly turn into a muffled nonsensical background noise, whilst inexplicable and disjointed thoughts, images, words and sounds will flash in and out of my mind, intermingling with the regular world shared with those whose consciousness isn’t impaired by R.E.M. intrusion – a temporary alien world that at best is amusing (if somewhat confusing) and at worst is excruciatingly terrifying.

Experience has taught me to no longer fight the overwhelming desire to sleep, as more often than not, it’s a battle that I will lose, suffering the consequences in the process. Perhaps the most disconcerting of these consequences is that in fighting to remain awake, my body seems to retaliate by telling my heart to beat in a very alarming manner – lightly but very rapidly, and continuing for as long as I remain in Noman’s Land, until I’m able to rouse myself sufficiently, whereupon it quickly reverts to a normal rhythm. Numerous heart-monitoring tests have revealed nothing untoward, so when this happens, I attempt to remind myself of this and make every effort to remain calm although it’s not easy.

So, to nap it is. Rather amusingly, medical guidance on the management of Narcolepsy recommends a ‘regular nap of 20 minutes’, after which the person allegedly will awake feeling refreshed. As I’ve already mentioned, unpredictably is rife in life as a Narcoleptic, and forcing oneself into a 20-minute nap at a set time every day is akin to finding hen’s teeth dangling from the ears of a flying pig. Life would be considerably easier if I could state categorically that at 2pm every day I would be unavailable due to a prescribed, enforced ‘siesta’ and that for the remainder of the daytime hours I would be alert and wide-awake, functionally normally. Wow, how much simpler and more enjoyable would life be if this were the case?!

So, when the oh-so familiar overwhelming need to sleep rears its ugly head, I know to immediately find somewhere comfortable (or at the very least, safe) to curl up into a suitable sleeping position, lay down my heavy head, and prepare to quickly enter the Land of Nod.

Now, at this point, I wouldn’t blame you at all if you’d conjured up an idyllic image of little ol’ me, curled up in a flower meadow, reclining against a conveniently placed haystack with a contented smile on my face, the warming sun shining down on my extremities, with the calming sound of buzzing insects and birdsong serving as an accompaniment to my golden slumbers. Pah, if only! If I’m very lucky, I might be treated to a minute or two of deep sleep, when all thoughts and dream processes are unfamiliarly absent but in reality, I tend to drift in and out of consciousness, mostly lingering in the frustrating world of ‘real life’, hearing every sound within my earshot but remaining still and silent, with eyes closed, physically unable to participate, and appearing to any observer to be fast asleep, oblivious to the world around me.

Anyway, where was I? Oh yeah, I’d made it into town only five minutes after the appointed time, and taking a deep breath, happily greet my friend.

Now, I’m not one for shirking my self-appointed responsibility as an ambassador of Narcolepsy awareness, and as such, most of my friends know about my condition. And this is the case with my friend. However, sometimes it’s nice to pretend to be normal, to grit my teeth, put on a happy face and go about my business as others seem to do. And whilst I’m not self-centred enough to think that I’m the only person dealing on a day-to-day basis with the negative impact of a medical condition, sometimes it feels as though I’m very much alone with ‘my’ issues. However many times I attempt to describe life with Narcolepsy, and however many words I write on the subject, and despite however many ‘understanding’ nods of the head I witness, unless you have Narcolepsy, there is simply no way that you can begin to comprehend the sensation of a debilitating sleep attack, combined with the fear of a hypnagogic or hypnapompic hallucination and sleep paralysis and the embarrassment of a cataplexy attack, and the social unacceptance of the reclusive and introverted nature that is oft-imposed.

So, here I am, trying to appear normal, wanting to discuss the everyday stuff of life and to escape for a short while into my fantasy of being someone whose life isn’t dominated by the undesirable impact of Narcolepsy.

Although Sleep Paralysis had thankfully taken the morning off, I'm not yet in the clear. ON waking, outside, I was perturbed to see that the blue skies and sunshine of the previous day had vanished, to be replaced by a stifling blanket of white cloud. Now, white cloud and my brain are not friends. On the psychological front, I find myself preoccupied with the urge to locate a giant knitting needle with which to pierce the sky, thus allowing whatever lies behind to flood in – I don’t mind what, be it sunshine, rain, snow or hail, anything has to be better than claustrophobic seamless white cloud. On a more physiological front, my eyes are incredibly sensitive to the overall whiteness, and I’m forced to go around with permanent screwed-up expression on my face, as I squint ineffectively. Naturally, this in turn leads to a headache, increased jaw pain and fullness of ears, and the usual extra dizziness as a direct consequence of squashed Eustachian tubes. But that’s another story altogether…

Not only is it overcast and stifling but it’s very disconcertedly both chilly and muggy at the same time, and I soon find myself uncomfortably damp and clammy. Still, I’m determined to remain in charge of the situation, continuing to chatter away as a form of distraction therapy. This seems to work for a short while, until I find myself in a sports store. For a start, a sports store is about as far from my choice habitat as is possible, and not unexpectedly, I’m somewhat out of my comfort zone, surrounded by footballs, hockey sticks, running shorts and tennis balls. But this isn’t my biggest problem.

The biggest problem is the store’s ambience, more specifically, the lighting of choice. Whichever direction I look, whichever way I turn, however much I triy to avert my eyes, there is simply no escaping the ever-presence of gaudy fluorescent lighting that dominate both floors of the store. Like many people, I’m particularly sensitive to fluorescent lighting. Not only will it induce a headache and tired eyes but more significantly, in my case, exposure to it will bring about a cataplexy attack. Fortunately, my cataplexy attacks haven’t ever caused a full body collapse – arguably the most misinterpreted image of Narcolepsy incorrectly purported by the media – when a sufferer will collapse to the fall as though suddenly falling asleep. Cataplexy, in fact, is a ‘loss of voluntary muscle tone’, considered to be peculiar to people with Narcolepsy, and can manifest itself as a moment of blurred vision, a stumble or a weakening of knees, a temporary stutter, a loss of grip leading to the drop of a say a hot cup of tea, a drooping of the head, an all over body weakness, or in some cases, a drop to the ground, all of which could last from a (barely noticeable?) few seconds to half an hour or longer.

Not long after entering this particular store, I can feel the effects of the lighting, and am aware that I am taking short, shuffling steps, remaining close to walls, rails and merchandise displays to steady myself should the need arise. I continue in this fashion, all the while trying to distract myself from the rising anxiety that customarily accompanies cataplexy attacks – although this is far from a novel experience, and I know that, theoretically, they will do me no harm, the feeling of not being in control of my own body still renders me psychologically ill at ease. I’m ‘OK’ until, whilst ascending a staircase, I feel the familiar sensation of being pulled downwards. The sensation is only fleeting but it’s sufficient to begin the ringing of alarm bells inside my head. My heart-rate quickens, my head begins to spin, the clamminess of my hands increases, and despite my mental processes of self-assurance, I know that I have to get out, leaving my friend to queue and pay for her goods unaccompanied. Feeling guilty but somewhat relieved, I wait outside the store entrance, outwardly simply passing the time of day by casually leaning on the wall but inwardly feeling far from casual. My knees still feel weak and wobbly, my hands are trembling, and boy do I feel a fool?!

What on Earth is so scary about what in appearance is a dodgy knee, a missed footing or a sudden loss of balance? Well, I guess unless you have Narcolepsy then you’ll never know, but as I’ve already suggested, I believe that it all boils down to a loss of control, a stark reminder that I’m an animal, a physical entity and not a higher being. My entire self is contained within and determined by the workings of my body. And if that body malfunctions, in my case on a regular basis, then I’m at a loss to do anything about it, instead I’m forced to pander to its every needs. Of course, adjusting my thought processes might do wonders here but that’s far from straightforward, and however realistic a task that appears when I’m feeling ‘normal’, unfortunately, at the crucial moment, survival instincts – the fight or flight response - kick in before I have a chance to anything less extreme. Cognitive Behavioural Therapy here I come then?!

Well, here I am, loitering outside a sports store, attempting to gather my composure, whilst people rush back and forth, laughing, shouting, chatting. When my friend appears, I smile, put on a brave face, and light-heartedly brush off my behaviour by casually remarking, ‘The lights were getting a bit much’…

Fortunately no further explanation is deemed necessary and we continue with the job in hand. I wobble in and out of a few more shops, ‘locking’ my knees to avert any serious mishaps, no doubt looking for all intents and purposes like an old-fashioned marionette as I do so, but safe in the relatively comforting knowledge that despite my overall cataplectic lack of coordination, I’m unlikely to end up as a motionless dishevelled heap on the floor.

Meanwhile, the nagging thought that a ‘coffee’ had been suggested is preying on my mind. Why? You might be thinking. Surely sitting down for a coffee is an experience to be enjoyed? Firstly, I don’t drink coffee. Not a problem in its own right but an issue that despite all good intentions has a tendency to segue into a full-blown discussion about Narcolepsy, about how ‘life without caffeine is unimaginable – I couldn’t function without it’, especially considering its recreational use! In many people’s minds, medical personnel included, caffeine is the easy answer to every Narcoleptic’s problem. For some it may offer some assistance in dispelling Excessive Daytime Sleepiness (EDS) but for me, it is a no-go area (other than when it forms part of the chocolate that I consume only very occasionally).

So, water for me it is. But of course, it’s not as simple as that. Firstly the issue of a venue’s choice of lighting rears its ugly head yet again – any hint of fluorescent lighting and I’m out of there. Secondly, rather key to my level of alertness, general ability to avoid EDS, and overall sense of wellbeing, is the need to keep my brain occupied at all times – something intellectual that involves some degree of non-automatic thought is best. Talking animatedly with a friend will usually suffice, although the danger with this is that my emotions become over-stimulated, leading to both cataplexy and sleep attacks – it’s a fine line we Narcoleptics have to tread - talk about a Catch 22 situation!

Well, I have to admit that it is some relief to me when my friend suddenly turns to me and asks if I’d mind if we gave the coffee a miss, as she is concerned about the pressing need to get home to her family.

I check the time and decide to brave the bus home, rather than phoning home to request a life. Not having the wherewithal to negotiate the short walk to the pharmacy to collect my prescription medicines (there are too many hazards to contend with when I’m on my own, the worry that I could inadvertently stumble in front of passing traffic being the main one), not to mention having to hold a sufficiently coherent conversation with the pharmacist when my brain and vocal chords are giving the distinct impression that they are anything but synchronised, I satisfy myself with the hope that my prescription request made it through and that my medicines would be delivered in only a couple of days’ time. At least when getting the bus, now that I have a bus pass, I only have to utter my destination, before sitting down and keeping myself to myself whilst concentrating as much as possible to remain ‘with it’ enough to know when to disembark. Fortunately my stop is the last one on the route and with any luck, should it appear as though I were refusing to remove myself from my seat, the bus driver would turf me off before I ended up back where I started!

The bus is ten minutes late in arriving, and I’ve been attempting to ward off a sleep attack by stimulating my mind by means of absorbing the information in the window of the nearby estate agent, walking slowly backwards and forwards (knees still in locked position), and eventually sitting down before I fall down.

When the bus comes I find myself a seat towards to back of the bus, where the potential to drop off unnoticed is more achievable, only to discover that directly above my head is yet another pesky fluorescent light. As moving is now not possible, I have to hope that staring continuously out of the window will negate any unwelcome effect of the lighting.

Well, I make it home relatively intact if still a little clammy, and definitely decidedly drained. By this time it’s 12.30pm. I’ve been out for only two hours, doing, theoretically, nothing more strenuous than pottering around the shops. I go inside, present my lovely smallest family member with a small gift of poster paints, and lower my weary body onto the settee, the intention being to spend the afternoon catching up with some long-overdue admin work.

All is going to plan until there is no denying it, my eyes are getting more and more heavy, the words and images in front of me on the computer begin to swim, the books on the front room bookshelves appear to dance, and before long my eyelids are remaining closed for longer than they are open – most definitely not your conventional blinking. It’s no good, my admin work simply isn’t going to happen. With a wry smile, I routinely inform my family members that I have no option but to take ‘a quick nap’ and that I hope it won’t be long before I see them again. I arrange myself into a comfortable position, cosseted in a duvet that is conveniently folded up on the settee, and allow my eyes to close properly.

Although I’m by no means awake, I’m able to hear every sound created by life around me – birds singing, the television continuing to entertain the Small Person whilst my Other Half quietly curses as he determinedly cleans the kitchen, and later the fun and games being had by my two loved ones, which I, rather sadly, can only participate in as a temporarily blind and mute voyeur, bound by the tethers of my brain as it confines me to a surreal and often very unpleasant, personal and isolated place somewhere between sleep and awake.

My ‘nap’ continues for several hours, and I’m properly roused only when my Other Half departs to the fish & chip shop to purchase dinner for all of us – so much for the nutritious, balanced meal that I’d been planning.

I manage to get myself into a seated position, whereupon there’s no gradual coming to, as I’m forced into holding my own in an intense conversation with a 4 year-old. Still not fully back in the land of the living, I drag myself off to empty my bladder before busying myself with tidying up the Small Person’s mess, too woolly-headed to embark on the daily ritual that is persuading her to clear up all the toys that have somehow become strewn across every available surface. I manage to fill my belly with some particularly yummy chips and re-attempt to get some work done. But despite being prostrate for a good proportion of the day, my brain is having none of it, and I resign myself to the realisation that all I’m mentally good for is email checking, a spot of social networking, some mundane game-playing on the computer and a wonderful cuddle with my lovely Small Person.

It’s not long before I feel my bed calling, and I gather myself together, perform the necessary ablutions and collapse into bed. Fortunately I manage to read for a short while, so perhaps all is not lost. I soon fall asleep, only to find myself immediately transported to a land of excitement and high adventure, where I remain until it’s time to get up the following morning. Boy, am I exhausted when I wake up!

1 comment:

Just stumbled across this blog post when I googled "cataplexy and fluorescent lights"... I can relate to so much of what you wrote here! Fluorescent lights absolutely triggers cataplexy for me, in many cases short, full-body attacks. It is horribly embarrassing, and like you said, psychologically disturbing, even though cataplexy is technically harmless! Thank you for writing this post and helping me to feel a little less like a freak! ;)